Palliative Care Services for Teenagers & Young Adults Claire Pendlebury Lead Nurse TYA Team STH Claire.pendlebury@sth.nhs.uk @clairenurse9
Aims of our session • National Picture • Local Services • Challenges of delivering palliative care for TYA • Skills & opportunities • Relationship with TYA Team and other Healthcare Teams • Looking after yourself Resources TYA Service Specification (NHS England 2019) Children’s & Young Peoples Palliative Care Service Model (NHS England 2019) Palliative & End of Life Care for children & young people (Anne Grinyer 2012) Palliative Care for Young People Aged 13-24 (Rosemary Thornes 2001)
What is important to young people? Relationships, sexuality and identity, friends, peer group approval, aspirations, education, work, risk taking behaviour, creativity, social interaction. Readjustment of relationships and social interactions Unpredictability and inconsistency are normal – no two days, hours or minutes are the same.
Community (Sheffield) Palliative Care Pathway 16 & 17 year old Story Palliative Teams GP CCN IE 17 years diagnosis POON’s TYA TYA CNS CNS Pharmacy Med Onc Needs Physical, meds, symptom control , Challenges personal care, nutrition. Psychological, emotional, family DN Night Capacity of teams and friends. TYA specific (behaviour team Prioritisation of services & development) Different practices & Support of the care delivery team. processes Expertise & confidence Community BBW Funding pharmacy Communication What worked well Paed Learning Points Goodwill & Can do attitude Onc. Flexibility Financial considerations Excellent communication Sustainability Future Planning Weekly MDT’s Response of teams Key Worker & Flexible Leader Changes in practice (syringe Patient voice Accessibility of team members Advance care planning drivers) Assess, review, adapt model BBW – Family support If it happened tomorrow… Value of each team member Claire Pendlebury TYA Lead Nurse STH May 2019
Looking after yourself Boundary Setting Supervision Perspective Peer Support Family support
Any Questions?
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